This blog post was written on 7/4/2020

Yesterday, I had a telephone consultation with our community paeditrican. Because of the coronavirus pandemic, they are doing all their consultations via the telephone. The best result has definitely been that the clinic letter was written within a day, never in my years of being in admin for the NHS or as a parent of a disabled child have I ever known such a quick turn around. The letter itself is fantastic in terms of support for Charlie and the issues he has with anxiety and the prospect of travelling for an hour every day for school.

However, this now means that we are now discharged from the community paeds team, which is a strange concept really as I fought so long to have Charlie’s issues acknowledged and accounted for by health professionals, that by them discharging you it kind of gives you an underwhelming feeling. It’s a little bit of limbo as to what happens next, where do we go from here, and who is there to support us. This is definitely a recurring factor in our journey, the over whelming fear of not knowing who is able to, or has to support us as Charlie has such individual high needs.

We’ve also had a change of medication to reflect the fact Charlie is in the small percentage of children that has an adverse reaction to Melatonin. Will be interesting to see how this one works and I am definitely hoping for the best solution. The GP will now review and prescribe the medication.

We have also had a referral to a charity to help support Charlie’s anxiety and mental health issues, which at times can be so emotionally draining trying to support him and his anxieties, low moods and suicidal thoughts. It’s absolutely devastating to listen to your 6/7/8 year old child talk about suicide. It’s something I never even knew was possible, and I certainly never thought I would ever have to listen to it or support one of my children through it. Some of this, is of course made difficult by the fact that my father committed suicide so these worries in me are of course magnified, possibly more than another SEN mother, which just adds to the daily battles of course.

Being out of routine is most definitely taking it’s toll! I can’t remember the last time Charlie got dressed, ate at a reasonable time i.e breakfast at 8am, lunch at 12pm, dinner at 6pm. We have absolutely no resemblance to that right now at all. Roll on routine is what I say.

Stay safe

Georgina x